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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Curious About What Vitamins Are You Deficient?
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roxieb73    3

I just got some blood work back showing mild iron deficiency and SEVERE vitamin d deficiency. I was just wondering when or if you had vitamins labs drawn at the begining what everyone was deficient in. Here are my labs.....

VITAMIN D, 25 OH

TOTAL 9 ng/mL Low *Range* 30-100ng/ml

Therapy is based on measurement

of Total 25-OHD, with levels <20

ng/mL indicative of Vitamin D

deficiency while levels between 20

ng/mL and 30 ng/mL suggest

insufficiency. Optimal levels are

>/=30 ng/mL.

VITAMIN B12 553 pg/mL *Range* 200-1100 pg/ml

Optimal levels for women 800 pg/ml

Between 400-800 pg/ml daily vitamin recommended

FOLATE,

SERUM

12.5 ng/mL

Reference Range

Low:

<3.4

Borderline: 3.4-5.4

Normal:

>5.4

IRON AND TOTAL IRON BINDING CAPACITY

% SATURATION 13 %(calc) Low *Range* 15-50

Optimal %25-%35

IRON BINDING CAPACITY 427 mcg/dL *Range* 250-450 mcg/dL

Optimal <350

IRON, TOTAL 56 mcg/dL *Range* 40-175 mcg/dL

Optimal for women over 110

Below 80 multivitamin

MAGNESIUM 2.2 mg/dL 1.5-2.5 mg/dL

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MitziG    94

For me, iron, vit E and Vit D- most of the population is D deficient due to the time we spend indoors. Celiac just makes it worse though.

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I also had low iron and Vit. D with everything else in the normal range. Blood calcium was ok but a scan showed osteopenia. Taking supplements for both in addition to a multivitamin.

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MoMof2Boyz    3

I haven't been diagnosed with Celiac(getting test done tomorrow) but I do have Hashimoto's ..my Vitamin D was really low 21 and my B12 is at 274 that's still in range but I believe that is still a low number

My labs showed that I was iron deficient but my iron level was ok...weird...

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MoMof2Boyz    3

Seems Iron and Vit D are common or is it they are just more often tested??

I don't know...I've always had to request testing for iron and vitamins.

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roxieb73    3

I haven't been diagnosed with Celiac(getting test done tomorrow) but I do have Hashimoto's ..my Vitamin D was really low 21 and my B12 is at 274 that's still in range but I believe that is still a low number

My labs showed that I was iron deficient but my iron level was ok...weird...

If you look at my labs above you will see optimal ranges and 274 IS low! My D is low too at 9! :( Funny I am also iron deficient but in the "normal" range. However normal is more than 40 but where they want you to be is 110! Big difference. My %saturation is %13 and low. All my levels continue to drop. I had them tested 2 months ago and my % saturation was %15. Tells me they are just not out of range YET. ;)

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Seems Iron and Vit D are common or is it they are just more often tested??

I had the whole range of blood tests done: B12, B6, magnesium, copper, zinc, etc., and only the Iron and Vit. D were a problem.

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woodnewt    8

My B12 was around 120 when I was diagnosed with celiac and has since gone up to very normal levels (>500). I have to take daily D3 drops because my vit D does not go up even with sun exposure. It was <20 and it is >40 now. I have never had iron deficiency, though I know it's common with celiac.

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heather806    2

This is right up my alley...

Just got diagnosed yesterday but for years have had problems with calcium, magnesium, vitamin D, B vitamins and iron/ferritin. Have received many iron iv infusions and take daily mega-doses orally of the others. Low calcium landed me in the hospital years ago, and it appears that the cause was/is Celiac.

I can deal with the crazy low iron, low vit d etc, but when calcium gets too low it is really scary. (started as pins and needles over a couple of days but then had sudden tetany in hands and feet, couldn't move those muscles at all, heart palpitations etc, numbness in whole body). They kept me in the hospital for 5 or 6 days... I urge everyone to get their calcium checked.

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MoMof2Boyz    3

This is right up my alley...

Just got diagnosed yesterday but for years have had problems with calcium, magnesium, vitamin D, B vitamins and iron/ferritin. Have received many iron iv infusions and take daily mega-doses orally of the others. Low calcium landed me in the hospital years ago, and it appears that the cause was/is Celiac.

I can deal with the crazy low iron, low vit d etc, but when calcium gets too low it is really scary. (started as pins and needles over a couple of days but then had sudden tetany in hands and feet, couldn't move those muscles at all, heart palpitations etc, numbness in whole body). They kept me in the hospital for 5 or 6 days... I urge everyone to get their calcium checked.

wow that's scary!! I just checked my labs( I had a blood workup done a few months ago) my calcium is 8.9 and the range is 8-20 so I wonder if mine is considered really low, even though it's in range?? How low was your calcium?

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heather806    2

wow that's scary!! I just checked my labs( I had a blood workup done a few months ago) my calcium is 8.9 and the range is 8-20 so I wonder if mine is considered really low, even though it's in range?? How low was your calcium?

When I was admitted to the hospital it was a 5.3, considered "critically low." I worked my way up to the 8's and as long as I take 3000 mg a day (6 500mg tabs) it seems to stay in the 8's. It was 8.9 last friday, woot! You are okay. :)

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Mom-of-Two    7

I was a teeny bit low in iron and folate- my D level was 36, which is in normal range but still hoping to raise it up, my B12 was 357 which is normal, but also think that could be up quite a bit.

I started a good quality B complex for the folate and B vitamins, and an iron supplement, in addition to my vitamin D. I also take probiotics and digestive enzymes, and fish oil by Carlson's.

I take a magnesium complex but not regularly because I just forget.

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roxieb73    3

Well all in all it seems iron and vitamin d are the main ones with b-12 ferritin and calcium to follow. I guess it all depends on where the damage is done.

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PNW Rick    1

Iron, B12, Folate, D, E, Calcium, Magnesium.

My Iron is inline now, so I quit taking an Iron Sup.

Taking a Fist Full of pills at each meal is getting old, but I am feeling better and starting to sleep better.

Here is my regime.

Morning.

2 Alive Max potency (Natures Way)

2 B Stress Complex (Twin Lab)

1 10K IU Vit D (Carlson)

2 Super E complex (Twin Lab)

Methyl B12 5000mcg (Jarrow Formulas)

5-MTHF Ultra Folate 800mcg(Kal)

1 Vita A 25K IU (Country Life)

Anti Viral

Anti Biotic

L-Glutamine 1K

Afternoon:

2 Alive Max potency (Natures Way)

1 B Stress Complex (Twin Lab)

1 10K IU Vit D (Carlson)

1 Vita A 25K IU (Country Life)

Omega Fish Oil 1250mg (Carlson Elite Omega3 Gems)

Anti Viral

Evening:

Anti Fungal every other night

Anti Viral

ProBiotic 85 Billion live & 31 strains (Garden of Life RAW)

Benadryl 50mg

Kirkland muscle relaxer

Just ordered a Cal/Mag/Zinc complex, Ester C, Carotenoid Complex, CoQ-10 mega gel, and the Enzymatic Therapy Fatigued to Fantastic Adrenal Support.

VitaCost is an awesome place to get Vites and Sups and all kinds of other stuff. Saved a ton of money, way over half of what I'd been spending shopping locally at the sup shopps.

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roxieb73    3

Just ordered a Cal/Mag/Zinc complex, Ester C, Carotenoid Complex, CoQ-10 mega gel, and the Enzymatic Therapy Fatigued to Fantastic Adrenal Support.

I see this one for Adrenal support is it common for adrenal problems in Celiac? I just ask because I have had Adrenal problems for sometime now.

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hannisa    0

I was suffering with an irregular heartbeat, had blood tests for it, found I was low in calcium and vit D and from there ended up with the diagnosis of celiacs.

I had no idea low calcium could lead to heart irregularities; it sure was a relief when my heart got back to normal.

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That is wierd but one poss explanation is due to total iron, bound and free iron levels. total is obvious. bound is that iron that is calculated in form of rbc count, and free. so if you are low on free iron you are getting enough but your body is using it to make rbc which is why total may be normal. however if free is high then you are getting it in but body is missing something (folic acid, b12 ect) in its ability to use it.

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heather806    2

Well all in all it seems iron and vitamin d are the main ones with b-12 ferritin and calcium to follow. I guess it all depends on where the damage is done.

I've been gluten-free for just under 2 months now and will be getting my vitamin levels checked at the end of this month -- curious to see if they've budged at all. If anyone here had vitamin issues, how long after going gluten free did you get them tested again and did they improve at all? I am continuing my Calcium/D/B-12/Mag doses but not receiving any iron infusions (I had started getting reactions to them anyhow and was "cut off").

This gluten-free stuff is not so bad! Eating out can be challenging and I have to plan more if we're going to be away from home but I've lost weight without effort and my tummy is flatter than ever. :)

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squirmingitch    495

My D was low at 25 with a range of 30 - 100. Iron okay.

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GottaSki    459

At Dx I was low in B1 and B12 - extremely low in D, K, Zinc and Copper. Currently I am not deficient in any nutrients - took just over two years gluten-free plus supplementation to get to normal ranges.

For decades I had very low iron - it became normal when I stopped menstruating at 37. Anemia/iron supplementation was the only diagnosis I received from doctors for decades. I never had all of my nutrients tested until I met with a the Celiac Doc because of a positive tTG IgA at 43. I did have one extremely low D prior to Celiac Dx - but don't think it was ever run before that.

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